New medication FAIL and I’m back to square one on Fibromyalgia relief and my neurologist won’t give me anything for the migraines. The Fibro meds worsen them and they also increase the frequency of them. Yes, he was right to, but now I am back to periods of time where I’m losing my mind a bit, to the persistent pain. I can’t work, watch tv, cook, bear light or noise and frequently the pain itself is so bad I can’t sleep. Over the last several years, having Soma was one of the very few thing that kept me sane and away from “dark places.” I could end the pain. I would be knocked out for half a day and useless for the other half, but the pain would stop for a little while. Long enough, to recharge for the next round.
I halted the latest medication last week, Cymbalta. The side effects were, let’s say, far ranging and intense. As bad or worse than the Nucynta, which I didn’t think would be possible. I’m not trying to be melodramatic, but the resulting feeling was akin to post-chemotherapy. Even when taking into account what August and September were for me both emotionally and physically, with my emotional/neuro triggers wreaking havoc on my physical pain and fatigue and nausea and dizziness and migraines, blah, blah, blah.
I had continued on the new meds, and doubled it as instructed. Last week or so, I halted it, because I cannot keep pumping that poison into my body when it’s not helping any of my symptoms and worsening others to the point of being unable to leave bed for anything but the bathroom, some days.
When I see my Rheumatologist again and make the next plan, I will follow-up again with the Neuro to look at migraine relief. I trust him, as he’s done right by me from the start. Even when he pissed me off by taking away my “nuclear option” for maddening and dark days of pain that won’t release, he only did it because I could die if I don’t take precautions on what I mix them with, so I really shouldn’t be mad at him. But I can’t be mad at my faulty body with any positive result, so I’ll be mad at him for just a bit longer before I cave in to logic.
But my latest medication attempt is done.
So, my vestibular migraines, fibromyalgia, tmj, other personal issues and the mixed bag of hilariously painful symptoms remain. It’s all worsened over the last six months, primarily due to medication changes and higher than normal stress and loss with continued worry on other fronts.
Or maybe it’s because I haven’t hit what Chooch has me referring to as “rock bottom” on my pain level. Meaning, the Fibro pain is at some point supposed to stop increasing, and then that’s what my expected pain level should be for the rest of my life. Unless it gets worse again. It seems I haven’t hit it yet, sadly, and winter is coming, along with stiff and jagged joints and less freedom of movement outside. Accommodations are being made to make it more comfortable and to hopefully be useful, too, even if just briefly.
But for the blessings of time with dear friends and family (my sister’s surgery went great and she’s recovering at the speed of light!!!!); three devastatingly handsome sons; an ironically delayed, yet glorious wedding for our oldest son; two new babies born PLUS a grandbaby on the way? I would’ve surely gone mad. Praise Baby Jesus for (evilsssssessssss) Facebook and the ability to see pictures of the faces so far away that are so deep in my heart. I still don’t trust ya, but thanks, Zucksy.
As my body is recovering as that nasty medication leaves my body, I don’t know if there are any medications left to try.
This one was put off for years as others were explored. When you know that a liver is a terrible thing to lose to prescription medication, you worry about how much they think is “safe enough” to pump into me with some of the fierce reactions I have. But there is much to do and many things to prepare for, so the search continues.
I’ve decided to attempt to incorporate the least stressful form of martial arts or yoga, depending on what’s available to me, once I’m able to regain some flexibility and strength. Even modified for my debilities, I must regain movement, regardless of the pain. An object in motion, stays in motion, after all. I had hoped to leap into a friend’s Krav Maga class, but that would be madness, I must now concede.
I’ll be starting smaller with yoga or tai chi via DVD initially, just until I’m more stable on my feet trying for balance. It’s not a strong suit for most dizzy people.
And just I’m hitting the Fifth anniversary of when the debilities became debilitating, but I also seem to approaching what appears to be the end of the road on what Western medicine has for me to try.
So all you skeptics are going to get to have loads of future fun at my expense as I delve further into dietary supplements, alternative medicine, meditation and regimented schedule. I do better when I am free to be on a tight schedule, so I’m attempting that in coming months. Hopefully, my memory will help me to set the reminders for it to be more effective. *crosses fingers*
I’m taking on some personal challenges after having watch a remarkable person fight death with literally every cell in his body and more strength, will, soul and courage believable. Some projects I’m dreaming of will get finished and some won’t.
I’m figuring out my limitations and working around them instead of hiding from them. The process will be messy and I’m going to do stuff wrong and poorly and ineffectively and the results will either be brazenly unpolished or over-wrought.
I can’t wait.
#BecausePGH